How Parkinson's Disease sufferers are helping each other cope in Doncaster

Erica, now aged 58, from Armthorpe, was a professional, working as a training consultant for Unipart Rail.

But she was noticing that things were slipping her mind that she would previously have remembered. Her speech was quieter than it was and she was sometimes struggling for her words.

“When you’re a trainer, losing your train of thought and words is important,” she said.

Other issues emerged, such as a twitch.

Eventually she spoke to her doctor. And after some time, she was diagnosed with Parkinson’s Disease.

“When it started I thought I had a trapped nerve,” she said: “My leg started to twitch quite a lot. So I went to the doctor, and they said anxiety or stress and dealt with that. The tremor didn’t go away, and it is down my left hand side, so my left hand was a bit slower. Then they referred me to hospital.”

Her condition led her to retiring from her job – but she is refusing to be defined by it.

“The medication that is now available can keep a lot of the symptoms at bay,” she said. “There is no clinical test – it is down to the experience of the clinician or doctors. I’ve had Parkinson’s for five years, but it wasn’t diagnised for a couple of years.

“People tend to put it down to anxiety and stress. Sometimes they go down a neurological path.

“I retired two years ago and a lot of that was due to Parkinson’s.

“There is no cure – it is just about keeping your symptoms at bay.

“One of the symptoms that affects me is being fatigued. I have grandchidren, and I still like to do things with them. I won’t let Parkinson’s stop me doing the things I enjoy.

“I’ve tried pottery, because my hands get quite stiff, and it helps me to keep them moving. I make myself do it.

“I used to enjoy walking round the New Forest. I went on walking holidays. I can’t do the miles I could any more though.

“You have to get over the initial shock and then find a way to deal with the illness

“It was a shock, but it is not going to define me or take over my life.

Since being diagnosed, Erica has joined a community of people living with Parkinson’s, who meet monthly at Cantley Community Centre.

Among those she has met at the Doncaster Parkinson’s Group is Pam Coates, from Bessacarr.

Pam has had Parkinson’s for nine years now – but it took well over a year before doctors diagnosed her condition. She has used her experience to help people like Erica at the group.

Pam, aged 72, is a former receptionist who worked at FJ WIlson Tyres at Marshgate. At first she was told that she just had a tremor.

“I was shaking, but the doctor said it was just a tremor. You hear that is what people are told a lot. But I think you have to see a specialist and they can tell you from the patient’s gait.

“When you are diagnosed, it is such a shock – no one can explain what it is like.

“You do get over the shock – but it does alter your life. I used whizz through cleaning my house, but I can’t do what I used to. I have a scooter now.

Pam lost her mum eight years ago. A year before that, her mum had noticed her shaking. Pam herself had not really noticed – she had been busy.

After her mum’s funeral her hand and feet shook, and she could not stop it. She went to the doctor and was sent to hospital.

“They knew what was wrong as soon as they saw me walk,” she said. “People with Parkinson’s have a certain gait. Once you have the medication it is managed.

“You learn to adjust.

“Parkinsons is a neurological disease which kills the cells in your brain. This can affect many people in different ways. Everyone is different. For instance, many people find it difficult getting up in the morning. It takes time to get moving about, whereas I’m the opposite, I can do things in a morning, which further on in the day I probably would be tired to do.

“Tiredness is a big part of Parkinson’s, along with tremor, stiffness, forgetfullness and balance and co-ordination. As people got further on into Parkinson’s, they get what is called ‘turning off period’, where your brain won’t tell your body to move and you are just stuck on the spot until your turning on period sets back in. I haven’t experienced this yet, but it must be frightening and also annoying to not be in control of your body.

“I have had Parkinson’s for about nine years now, but wasn’t diagnosed until about 15 months into it. I was told by my doctor that I just had a tremor. Medication is a big part of Parkinsons, taking it every four hours, four times a day which must be taken on time.

“We have a Parkinsons group in Doncaster which is held the first Monday in the month. 1.30pm until 3.30pm at Cantley Community Centre with chair based exercise at 3pm.

“Everyone is welcome and you may find it rewarding to be with other people with the same condition.”

Both are dedicated members of the Parkinson’s Group, which currently attracts around 30 members. It at one stage had 80, and the members are keen for more people with the illness to join.

Pam has been going for many years, and both feel the group has a good relationship with Parkinson’s nurses, who also come to the group meetings.

She said: “The importance of the group is that it is a support group for people who are newly diagnosed. There are people there from when it was first formed who have a lot of experience of how to cope. It is nice to be able to chat to people understand.”

Parkinsons Disease – according to the NHS:

>As the condition progresses, the symptoms of Parkinson's disease can get worse and it can become increasingly difficult to carry out everyday activities without help.

>Many people respond well to treatment and only experience mild to moderate disability, whereas the minority may not respond as well and can, in time, become more severely disabled.

>Parkinson's disease does not directly cause people to die, but the condition can place great strain on the body, and can make some people more vulnerable to serious and life-threatening infections.

>With advances in treatment, most people with Parkinson's disease now have a normal or near-normal life expectancy.